Solicited Advice from Strangers

It was a typical weeknight and Max was fast asleep by 7pm. My husband and I were lounging on the sofa; he was watching TV and I was playing on my laptop. Max was over a year old and I was obsessing over the dreaded question that parents with kids with CF often ask themselves; should we have another child?

I remember sobbing when Max was in the throws of meconium ileus and genetic tests and the whole whirlwind of hospitalization. Sometimes I was crying for my son, but I also found myself crying for the future children I so desperately wanted. I came from a large family, two brothers and two sisters and almost a dozen nieces and nephews. I definitely wanted more children. Max's diagnosis was devastating, but it was a gift that kept on giving. Not only was a left with a child with CF, but all future children would also have the possibility of having CF. After my feelings about Max's diagnosis started to reach an equilibrium, my morning process over future children started.

As my husband watched some mindless TV show, I started perusing the Internet for some advice. I don't know what I was looking for exactly. No, I take that back. I wanted to find the answer. I wanted someone to say, "Sure, have another child. You should go on with your plans as if you never knew about CF at all." Well, that wasn't realistic, so I went looking for something that I could use to convince myself and my husband. What I really wish someone had told me was that I already knew the answer, I just didn't want to listen. I don't know why I thought some stranger could give me better insight to this extremely personal question and why I decided to turn off my internal voice. It was a "duh" moment that caused me much pain and undeserving feelings of guilt.

After typing something like "second child with CF" in my search engine, I quickly found a plethora of posts, advice, and opinions on the subject of having a second child knowing that you are a CF carrier. Wow, jackpot! I was smart enough to use this information in a completely logical and rational manner to deduce the solution to my question. Right. What I found was harsh criticism for even the thought of bringing another life into this world. I read point of views that ranged from "I would never have another biological child" to "I did roll the dice and now I have two kids with CF and my life is miserable". It was extremely discouraging and surprisingly unsupportive. Sure, everyone is entitled to their opinions and I believe everyone has the right to choose their own path, but calling someone inhumane for wanting another biological child was not the type of advice I was seeking. Why did I even care what these strangers had to say? In retrospect, I was looking for approval. As I said, deep down, I already knew what I wanted to do. I wanted a second biological child. I wanted to be pregnant again and I wanted a second chance for a healthy baby. I wanted to hear that if I chose to have a second child, knowing the risks, that I was not a bad person.

Of course, I never posted on any online forum soliciting the advice of strangers. There were plenty of poor souls who did that for me. I just perused the battlefields of the posts where such a dichotomy of opinions seemed impossible and exceptionally heated. I'm also one who shies from conflict, so despite my strong feelings about the subject, I will only post my response here in the safety of my own blog. If I were to ever respond to those who are seeking the same type of advice or reassurance as I was 2 years ago I would write something like this:

Listen to your heart. If you are asking this question, then you probably already know the answer. Whether you decide to do PGD, adoption, rolling the dice and doing it Au natural, or opting not to have any other children, you are not a bad person. Your decision is yours and your spouses and no one can tell you what is the right thing to do, especially some stranger who doesn't share your same religious views, morals or basic beliefs. You already know what's right for you and that is all the matters. Just follow the direction your heart takes you and you will never regret it.

My Chubby Baby Wish

I was 8 months pregnant during Max's 2nd Birthday Party. I was ready to pop, but so excited for Max's big day. We had long known the news that Penelope would also have Cystic Fibrosis and probably require the surgeries and hospitalizations that we had to go through with Max. I was working my way through that news and trying to stay as positive as possible. We knew our risks going into this pregnancy, unlike with Max. So, despite the news being devastating, we were okay. We knew what to expect this time and we were preparing ourselves mentally.

We honestly didn't think it would happen to us again. We thought surely we have paid our debts and we will only have easy sailing from now on. We approached the idea of having another child very logically and rationally. First, we went to visit a fertility clinic. There's a procedure called Pregestation Diagnosis (PGD) that we wanted to know more about. Basically, you fertilize as many eggs as you can and a scientist does genetic testing on the embryos. The embryos that have no CF mutation are implanted or frozen, guaranteeing a healthy baby. The other embryos, specifically, the CF carriers and the CF positive, are discarded. Discarded. That's a hard pill for me to swallow. I really thought long and hard about this procedure and this method. How could I justify this and make myself comfortable with this decision. I immediately went to the heart of the matter and asked myself was this a life that I was about to do harm to. Was the embryo, only a few cells, a life. Well, in my eyes, yes. I looked at my son and thought he would have been one that was destroyed. I knew at that moment I couldn't make the decision on which embryo lived and which one was destroyed. That's not who I am. Don't get me wrong, I pass absolutely no judgement on those that choose this way to have children, and hope that they would extend the same courtesy to me. I'm not saying that it's wrong for everyone, it was just wrong for us. We all have our hierarchy of morality. Some would argue that I chose to give my child this disease and that's worse than destroying embryos. Well, I just don't view it that way. It's really that simple. I believe the first and most important rule is do no harm. Me choosing to have another child wasn't me directly doing harm. It was a risk and nothing worth doing comes with zero risk.

Alas, we turned to an adoption agency to answer some more questions. Having many adopted children in my family and my extended family, I knew that adoption was definitely an option for us. Unfortunately, the adoption process is not easy. We were disqualified from country after country from every reason from not married long enough to too much of an age difference between my husband and me to already having a child with special needs. We were extremely discouraged, but left feeling we knew what we wanted to do.

So, at my son's 2nd Birthday Party, a friend came with her 3 month old little girl. It was the chubbiest little baby I had ever seen. I was so jealous. Rage and sadness hit me like a ton of bricks, because I knew my little girl growing inside me was never going to be chubby, never going to normal and healthy. I was never going to know what it was like to just be able to enjoy my child and not worry about CF. For that instant, I was so envious and so weak. I thought, I just want a chubby baby.

Well, life is funny sometimes. Just when you really think you know what you're going to get, life throws you a curve ball. Curve balls aren't always a bad thing and sometimes you get what you wish for!!!

 My Chubby Baby. I'm especially proud of the little rolls on her legs!!

A Little Introduction

I was frantically looking for the nurse call button while trying to clean the fluorescent green spit-up off my baby boy. Something doesn’t seem right; I just know it in my heart. I’m too happy I think to myself. Something is bound to go wrong. Things just seemed to perfect.

Even as I’m writing this it seems a little dramatic, but, at the time, the panic was overwhelming. It was a panic that I’m used to feeling. I’m all too familiar with the feeling that the ride is about to get bumpy.

            The nurse came in and took Max. She said I was right to call and that green spit-up was not normal. She was so calm; as if she knew the most important job she had to do was to stay calm for me at that moment. She was a woman who was born to be a nurse and in that moment she was awesome.

            I was all alone in the hospital at the time. It seems that I’m always alone when things start to turn south. I had sent my husband home to shower and take care of the animals. I had things under control. Sure, Max seemed to be spitting up an awful lot and the nurses seemed to comment a lot about the amount of mucus he was producing, but everything was so great. Little did I know that the nurses were already concerned about Max. They were monitoring him closely and didn’t even share this with me until they had solid evidence that something was wrong. Green spit-up was solid evidence.

            The nurse came back in with the doctor in tow, no Max. This was going to be bad I thought. They had taken Max to the NICU and had begun preparations to transport him to Johns Hopkins Hospital.

How could this happen? When did things get to this point?

            The one thing that I’ve noticed about drama in my life is that it goes from 0 to 60 in seconds. One minute I’m thinking about how great life is and the next minute I’m begging any higher power that will listen to just spare me this suffering. But that’s the nature of the beast. Bad times are unexpected and you are usually poorly prepared for them. You are blindsided.

            Now, don’t get me wrong. I don’t believe that I’m unique with my suffering or that I’m the only one who experiences things like this. I know that everyone feels this. Everyone feels the panic of a blindside in their life

            I don’t feel like I’m an expert at dealing with bad times. I still make terrible mistakes. For instance, a couple of weeks ago, I lost my mind for a couple of days when the sonogram at my 29 weeks check-up showed that bad times were right around the corner, again. I wanted to die. Immediately, my mind went to giving up. This life is too hard; I can’t do it. All those negative feelings I have had to conquer in the past came rushing right back and I knew I had to do all the work all over again. But, something was different this time. I only lost my mind for a couple of days. The time before that, I was only lost for a couple of months. And, the time before that, I was only gone for a summer.

I was beginning to handle the bad things faster. I was able to see that things were going to be okay sooner. But, I wasn’t able to handle the bad news better. I still broke down like a little baby. My goodness, if you could have seen the doctor’s face when I broke down on the table after he told me about my daughter’s dilated bowel. He wasn’t sure what to do. I really felt bad for him.

After I voiced my pain to my husband and my sister, I was able to see that this was familiar and I’ve made it through once before. I was able to see that things were bad once before, but now they are okay. I was confident that things were going to be okay again.

Believe me; this revelation that things will be okay didn’t occur overnight. I’ve had quite a few blindsides and plenty of time to practice. I do have to admit that the concept of “everything will be okay” wasn’t my idea. I was watching television one day and the Dalai Lama was being interviewed by some primetime newscaster. I had never heard the Dalai Lama speak nor did I intentionally seek his advice. I wasn’t looking for any answers. I was honestly just bored and nothing else was on. I only remember two responses from the Dalai Lama in the whole interview. In retrospect, I wish I was smart enough to listen more carefully. First, the interviewer asked him who created the universe. He calmly answered, “We did.” This response is what got me to look at the television. I wasn’t used to a religious figure not mentioning a god when talking about creation. Furthermore, he gave the entire credit of the awesome universe to human beings. The other answer that stuck with me, though I didn’t realize how much it would affect the rest of my life at the time, was given when the interviewer asked something along the lines, “What advice do you have for someone going through difficult times?” He said, with a broad smile, “Everything will be okay.”

This didn’t make me want to run out a convert to Buddhism. In fact, I thought of myself more of an atheist. I was an intellectual and surely God or a higher power didn’t belong in my life. I actually thought people who believed in anything were weak or naïve. Why would you believe in something so ridiculous? Despite not being completely sold on the religion aspect, I couldn’t help but find myself reassuring myself and others with “Everything will be okay”. It was the simplest concept that really seemed to be the truth. Life was about to really test my optimism. Was everything really going to be okay when truly horrific events start to rock my world?

            Max was in the NICU a little over an hour away from me. I had a broken tailbone and separated synthesis pubis, so walking or moving was very difficult for me. Despite my desires to leave the hospital and get to my son, I listened to my doctor’s advice to give my body another day to recover from delivery. Actually, it was more like my body made the decision for me as walking was near impossible.

            My husband was amazing. He became this strong and dependable person who was loving and caring to this little baby that he just meant. He didn’t think he had it in him to love something so unconditionally from the first moments, but he did. I think it surprised him as much as it surprised me. In fact, he was too good. It was like he was feeling the way I was supposed to feel. I was busy feeling overwhelmed and ready to run. I distinctly remember walking alone, back to where I was staying, after visiting with Max. There were taxi cabs waiting for the next customer and I thought to myself, “I could just get into one of these cabs and leave. I have enough cash to buy a plane ticket and just disappear.” Boy, am I ever glad I got on that plane and never looked back!!

            Actually, I didn’t run. I stayed and I fought. I am so glad I did. Although, life hasn't turned out the way I imagined, I know everything’s going to be okay.